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lizzyt

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Hello to all of you. I have been reading alot of the posts here for a while but havent posted anything myself since I wasnt sure if I was in the right place. My father has been ill for quite some time and the only real diagnosis I have gotten from what my mother has told me is pseudobulbar palsy and mini strokes. His symptoms have been progressive. His speech has deteriorated to the point that no one can understand anything he tries to say anymore. It makes me so sad and I feel so helpless. The Doctors offer no suggestions for ways for him to communicate. Speech therepy was a joke. If anyone here is in this situation and has found a method of communication that has worked for them I would love to hear about it. Thank you in advance for any help you can provide.

lizzyt
 

hboyajian

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So sorry your dad is struggling with this. I may be able to help a little.
For the immediate time, I suggest making an alphabet board and put frequently needed words and phrases on it as well. Make each letter large and in a box grid so that he just has to point somewhere within the box to indicate a letter. If he cannot physically do this, another person can point to the letters and he can indicate yes or no...more time consuming, but may work better than nothing. My niece was really good at lip reading, even when my dad was just moving his lips a little. It helped to get us in the ballpark when we weren't quite getting the spelled words from the alphabet board.
For the long term, there is communication equipment that can use another voice or the recorded voice of the PALS. I do not have experience with this. Others will know more.
 

midwestgirl

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Lizziet
I can truly understand how you are feeling - my mother has ALS and her speech started declining March 06, and we can only understand a few words now. My mother does not have any computer experience, so I am just beginning to explore communication devices that she may consider - and she is always reluctant to try something new. Currently, she writes what she wants to say - she does have an erasable board/ pen, but she seems to prefer just paper and pen. She also has some charts (I don't know the correct name) that says, "I feel" or "I want" or "I hurt" and then each chart has pictures with the word that could apply. ex I feel: sad, mad, angry, tired, hungry etc, or for I hurt: head, back, neck, leg, stomach, etc.

Just a couple very simple ideas. There are a lot of communication devices so you have to find what fits your father's personality. Good luck!
 

CindyM

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Hi Lizzy. Welcome to our little corner of the internet. There is a lot of expertise on this board, as you have seen. Hopefully we will be able to help you and your Dad. Cindy
 

lizzyt

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Thanks for all your replys

Mom and I will have to try to come up with something. He has trouble writing clearly also, so writing things down isnt always very helpful. Sometimes I just wonder what is going on in his mind. My feeling is he knows whats going on and what he wants he just cant get it through to us. We went Christmas shopping last year and I couldnt understand what he wanted to look at, so he would wander around the store till he found what he wanted then I could help from there.
He has been falling and has trouble with his balance. Ive thought about getting him some kind of walking stick that might help him keep his balance better. He seems to do better if he holds onto our arm when he's walking. But sometimes when mom tries to help him he gets mad. So I tend not to make to many suggestions. Thanks again for all your input. Just reading what others are going through has helped.

lizzyt
 

hboyajian

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I don't know if he would accept this, but a 4 wheeled walker is very stable and you can move quite quickly with it in the earlier stages of muscle degeneration when balance is the problem but there is still sufficient leg strength. They also are handy as a seat when stopping to rest where there is no chair available. Most have a basket option for carrying things. My dad's walker gave him independence in mobility for a couple o fyears before he needed a wheelchair. Holly
 

CindyM

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Hi Lizzy-another thought: do you know the name of your Dad's Physician or clinic? If so, can you look them up on the web to see what sort of speciality they focus upon? I'm just wondering if he is being treated by a general PC or some sort of speciaist...Cindy
 
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